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Thursday, September 18, 2014

My kid who's never been embarrassed in his life: "It's a little hard to change in front of everyone [for gym]." I'm so excited by this authentic junior high experience! Then he added, "Actually, no one's looking."

Friday, August 29, 2014

Every time there's some version of the meme "If only my life were like I make it look on Facebook," I laugh with a knowing nod -- and a little bit of a lump in my throat. I've always had a bit of a Pollyanna image (read: annoying bubbly
person), so it's no surprise that I post positive things on Facebook.
And I do and have a lot of amazing shit, so I'm not making up the stuff I
say that makes my life look rockin' (and it is). The 7 days of positives excercise
was cake...I could have written 1,000 more. As an aside, it's been a pleasure to read the ones from others who are, well, not always so positive.

So why the lump? Maybe because I know that when it comes to Theo, I paint a one-sided picture on Facebook. I talk about his beautiful mind, the sweet way he sees the world, his happiness to see his sister in the morning, his soothing voice and gorgeous face. I show not just Theo in the most positive light, but autism, because I want people to see that he's doing great and so am I. They don't need to feel sorry for us.

The reality is, no one nominated Theo to be the face of autism for my friends and family. I have so appreciated his support system on Facebook. Everyone loves an underdog, so when I post stuff about his small triumphs, he gets an outpour of love. And it's genuine -- everyone genuinely loves this kid, and should.

But then there's the shit I don't post. The stuff that wakes me up in the middle of the night (when I'm writing right now).

Last night was Theo's middle school orientation, and what did I post to Facebook? A photo of the incredible view from his school in LIC.

I didn't post how painful it is when we're in a room full of kids his age and the differences are so in-your-face. Look, comparing kids sucks. We shouldn't do it, but we do. I'm not proud that when I meet kids with disabilities a whole lot more severe than Theo's, I am grateful. "It could be worse" is a frequent commentary running through my brain, or spoken aloud with my husband.

But it could also be better, something I try not to think or feel or say. Most of the time, when his differences are not so glaring, I'm fine. It's just those damn occasions when he's in a room of his peers (so yeah, any time I've ever visited him in school, ever).

So here's what I didn't post to Facebook about middle school orientation. I watched the incoming 6th graders get their new schedules, check to see if they have friends in their classes, wondering who's in homeroom with them, hoping they got the teacher they wanted. What team will they try out for, what club will they join? Some kids were excited to be there, some nervous, some clearly unhappy summer was ending, but regardless of their emotions, they showed true understanding of what was occurring -- this new junior high journey they were starting.

Theo's big takeaway was that there are 8 periods in his new school instead of 7 (I never even knew there were 7 periods in elementary, but of course he did). This is not to say he is unaware of what's happening. He is nervous about middle school, and excited. He's glad he's taking the schoolbus because he's not ready to take a train himself, he says with a self-assuredness that's so wonderful to see. In general, I've been pleased with his age appropriate level of anxiety about starting a new school.

But as we sat there eating potluck dinner, I sighed as Joe had to constantly beg Theo to wipe his face and hands as he ate his meal like an animal, chicken grease all over him, everywhere. All I could think about was him sitting at lunch on a typical day and all the kids watching him eat this way, with no one to tell him to eat like a human being.

He gets therapy for so many things, so why can't anyone teach my kid to fucking eat? If you'd seen the looks I've gotten in IEP meetings when I've brought this up... as if to say, Your kid is way behind on reading and you want us to show him table manners?

After the teachers introduced themselves to the crowd, we had the chance to meet them individually. Like a nutty overbearing mom, I marched him over to the math teacher to gush about how he loves math, and the teacher was met with a few forced nods. Then I proudly told the music teacher about the theater Theo's done and how much he loves it. Excited, she asked what he likes best -- the singing, the dancing... He stood there bored and unresponsive, so she teased, "Or is it just something your mom sticks you in?" I was mad at him for making me look like an idiot, but really I knew I was pushing it and it was a bad time to be meeting teachers. He was tired and overwhelmed.

Sometimes I can't sleep, and like every mom, I think of everything I'm doing wrong. How does Joe take it all in stride? Why doesn't this stuff bother him? His response to all kinds of concerns is a simple "He's Theo, babe." And he's not being aloof -- I believe that he truly doesn't need Theo to be like anyone else.

You see it all the time on the autism blogs. "My child is special, and I wouldn't change him for anything." Well, on days like these when I'm mid-tantrum, damn straight I would change him. Damn straight I would want him to be the forbidden N-word -- normal. So there, I said it. I admit it. Sometimes it just gets so hard. This parenting business in general is hard. Pollyanna confesses she doesn't know what the hell she's doing.

Today we'll head to the Poconos and I'll have my usual smile on my face, and Theo will be happy because he lives for trips like these, and I will enjoy his pleasure. I will relish seeing him in his element, in the lake and the cabin and the woods getting good and dirty and smores-y like kids should in summer. Next week, I will post pictures of Theo in his new school uniform looking handsome as hell.

Theo is a happy kid. Maybe the happiest I've known. The things that bother me don't bother him, which makes me a jerk. Maybe I shouldn't have put all this in writing. Maybe I shouldn't share it with anyone. But for some reason, all of a sudden I couldn't stand that I was putting up a front on Facebook. Stupid, probably. Probably middle-of-the-night delirium. But here it is: the dark side.